Tuesday, February 19, 2008

Evidence-Based Medicine

I've been thinking a bit about evidence-based medicine as a treatment paradigm, especially as espoused by bloggers like this guy. I hear where he's coming from: Using strange twists of logic to discourage children from getting vaccinations is terrible. Saying HIV is a hoax is a death sentence for millions. Funding reiki and homeopathy trials with federal dollars does seem a bit daft--there are, after all, a gazillion plants worth researching, some of which have been in human use for a long, long time, and to me seem more promising than copper disc therapy or whatever. (But I'm a plant lover. I digress...)

Yet evidence-based medicine does not accurately reflect what's happening in some areas of medicine. I wouldn't be surprised if every fertility patient had a passionate love-hate relationship with the notion that medical treatment should be based on the best current science vetted via well-constructed clinical trials. Unfortunately for us IF patients, this isn't really what treatment is about. It's about getting you pregnant, somehow, someway. Whatever your underlying medical condition is, is your problem.

Part of the problem is that the evidence just isn't there for most of us, and we get the same treatments as everyone else anyway. For instance, looking at, say, Clomid and ovulatory women, trials are teensy. They also often lump together couples with various diagnoses (mild male factor with unexplained infertility--how are these two conditions comparable, folks?). Also, is there a standard definition for "unexplained infertility"? Basically, it's next to impossible to find quality information about what would seem to be very straightforward questions. I mean, how hard would it be to design a multi-center study of Clomid in ovulatory women? Not fun, no, but hard? I don't think so.

Look at the crap that gets passed off as "evidence" and scientific breakthrough: the whole fertility diet hoopla of earlier this year. Newsflash: your diet and menstrual/reproductive health are somehow connected! I mean, can't we find some more pressing questions to investigate besides whether underweight women will start ovulating if they eat whole-fat dairy? Like, oh, I don't know, the efficacy of IUIs versus IVF? Which is where many of us who will not be helped by an extra serving of oatmeal will wind up.

Then there's the basic problem that for many of us, the doctor doesn't know what's behind the barrier to pregnancy. Meaning that while they might know you have PCOS, they don't know why or how or even quite what. Or the mysterious (and now out of favor) luteal phase defect. What is that, anyway, when you get down to brass tacks? Has there ever been an investigation of whether luteal phase length is indeed a major factor in infertility? I mean, for all we know, there are loads of fertiles out there with 9-day luteal phases, cheerfully conceiving and carrying to term, never charting a cycle in their lives. We just don't know.

Not knowing is torture for most of us. We are children not of faith, but of science. Even those among us who are religious. Our lives are surrounded by the products of scientific reasoning and they often help us. But here, there's no real help, just some hints and shrugs of the shoulder. And time is of the essence. We can't just twiddle our thumbs until researchers figure something out, so we take drugs, have surgeries necessary and unnecessary, and engage in various embodied forms of magical thinking.

When you're dealing with a world where evidence is scarce but time limited, you start to enter a psychological state where you'll try anything, and then swear that it worked. Yes, it was the special lube or the microelements or the double IUIs or the IVIG. It was the reiki or the primal scream therapy or the poetry workshop that did it. I think that the outside world, particularly the science-based medical world, doesn't understand how we get to this place, where we are willing to believe what most of us would find questionable in any other context. I would never have gone to our local supplements bazaar and stocked up on borage oil and royal jelly until I couldn't get pregnant and was desperate to see if something, anything might help. And no one would accept psychotherapy as a primary medical approach to thyroid cancer. Yet many infertile women are told that they are plagued a psychological barrier to conception, some secret, festering ambivalence that's a real embryo killer.

Thus, this isn't just about our psychological state, either. It's also about the mumbo-jumbo that society imposes on our medical conditions. Just as the treatment of HIV-related conditions or obesity is complicated by an incredible amount of cultural baggage, so too infertility, the twisted sister of the glowing Norman Rockwell-esque images of pure, natural femininity.

I'm not sure where any of my thoughts are going here, besides having myself a good ol' rant. But I guess I wish the medical establishment and society at large would admit, "Uh, yeah. We don't really know shit. We'd better work on that."

4 comments:

JellyBelly said...

thanks for inspiring my post this morning.

you put so many of my feelings into words.

btw, i'm thinking that the end of my horribly flu bug will start the onset of my eucatastophe (did i spell that right?).

Io said...

I have to admit, as much as it kills me sometimes that Al's diagnosis put us on the fast track to IVF w/ICSI, I recognize how grateful I should be that at least we know (ok, assuming there is nothing wrong with me).
It sucks that you do have to put up with not knowing what is wrong and how to fix it.

Denise said...

It seems to me that many areas of medical science must just be trial and error. And really, isn't that how modern medicine got its start? I consider myself lucky in that this is the only area where I've been so close to my own medical treatment (or had need for such long term medical treatment) and it definitely seems to be trial and error.

It is so frustrating to not know what is wrong and how to fix it. Let's try this and if that doesn't work, let's try something else. And then, just for kicks, let's try the same thing that didn't work last month because odds are it will work eventually (even though we don't know what's wrong). Isn't the definition of insanity going through the same motions and expecting a different outcome. Huh. You made me think on this one...

Geohde said...

You make some good points. Unfortunately the conclusions of trials are only as good as the quality of the study design and execution. Garbage in = garbage out.

J